PVFS/ME/CFS Watch

Thursday, October 28, 2004

FDA acted improperly approving experimental anthrax injections for general use

Article published Thursday, October 28, 2004 (note to self to find archived post in my main blog, on anthrax vaccines and squalene):

The Defence Department must immediately stop innoculating soldiers with anthrax vaccine, a federal judge ruled yesterday, saying the Food and Drug Administration acted improperly when it approved the experimental injections for general use.

U.S. District Court Judge Emmet Sullivan said the mandatory vaccination program - which has innoculated more than 1.2 million soldiers since 1998 - is "illegal." He wrote that his ban on involuntary vaccination will remain until the FDA reviews the anthrax vaccine properly or until President Bush determines the normal process must be waived due to emergency circumstances.

Wednesday, October 27, 2004

Symptom improvements with Pramipexole, a Parkinson's drug, found in Fibromyalgia trial

The following is a copy of ImmuneSupport.com report dated Oct. 18, 2004. Note, the study on Pramipexole also reports significant weight loss; currently, there are no medications approved for the treatment of fibromyalgia, a complex chronic pain illness affecting 6 to 10 million people that can lead to significant patient disability. Patients with fibromyalgia suffer from a variety of symptoms ranging from stiffness, muscle spasms and body wide pain, fatigue and severe sleep disturbances.

The dopamine agonist pramipexole, (Mirapex (R), Boehringer-Ingelheim) currently indicated by the FDA for treatment of Parkinson's disease, provides a high response rate of overall fibromyalgia (FM) symptom improvements, as well as promoting significant weight loss, according to data presented in a late breaking abstract on Thursday, October 21, at 9:45 am, Ballroom A, at the American College of Rheumatology Annual Scientific Meeting, the National Fibromyalgia Association (NFA) announced today.

The double-blind Randomized Placebo Controlled 14-week trial to treat fibromyalgia with pramipexole, was conducted by Andrew Holman, MD, a rheumatologist in private practice in Renton, Washington and a member of the advisory board of the National Fibromyalgia Association.

Holman privately funded this research for people with fibromyalgia (FM) when his own FM patients experienced pain reduction with the use of the drug.

Holman reports that 56 out of 60 patients completed the trial which set out to evaluate the effectiveness and safety of dopamine agonist pramipexole in patients with fibromyalgia. 42% of patients treated with pramipexole achieved greater than or equal to 50% decreased pain compared to 14% of patients taking placebo.

"This may be the highest response of overall improvement of fibromyalgia symptoms of any single medication tested so far," noted Holman.

Patients also reported substantial improvements in function and fatigue. The most statistically significant side effect was weight loss. Whereas many patients with fibromyalgia and other chronic illnesses often report weight increase in part from use of medications, one third of the participants taking pramipexole lost between 5 to 35 pounds during the 14-week period, according to Holman.

"Dr. Holman's study suggests new options for research in the treatment of fibromyalgia," said Lynne Matallana, president and founder of the National Fibromyalgia Association. "This will provide significant hope for patients searching for ways to effectively manage the chronic pain of this severe disorder."

Currently, there are no medications approved for the treatment of fibromyalgia, a complex chronic pain illness affecting 6 to 10 million people that can lead to significant patient disability. Patients with fibromyalgia suffer from a variety of symptoms ranging from stiffness, muscle spasms and body wide pain, fatigue and severe sleep disturbances.

Andrew Holman, M.D., is assistant clinical professor of medicine at the University of Washington in Seattle, and president-elect of the Northwest Rheumatism Society.

The National Fibromyalgia Association (NFA) is a nonprofit [501 (c (3)] organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA produces educational materials, sponsors CME and patient conferences, hosts a web site (www.FMaware.org), and publishes Fibromyalgia AWARE, the only consumer magazine on fibromyalgia, chronic pain and other invisible illnesses.

For more information about the National Fibromyalgia Association, visit the NFA's website at www.FMaware.org.

Monday, October 25, 2004

Exercise may ward off Parkinson's?

Below is a copy of a BBC report dated 25 October, 2004. I am posting it here because it explains what happens in the body when it is exercised.

Of course exercise can improve wellbeing. Common sense. But I just wish doctors would research why exercise causes such deathly illness in those with severe ME/CFIDS.

Key to understanding this illness could be to find out why exercising (and alcohol and stress) has such a toxic poisonous effect. And what is it with orthostatic intolerance - why can I, and many others, not sit up or stand up for longer than ten minutes at a time without feeling incredibly ill? Some cannot even sit up or stand up. Some are so ill they have to be in darkened rooms fed with tubes.

Here is the report. Note the heading "may ward off" and the last line "There is, as yet, no evidence to suggest that exercise can have a neuroprotective effect in people with Parkinson's disease."

In a study on rats, exercise prevented degeneration of nerve cells that are normally destroyed by the disease.

The University of Pittsburgh researchers are now recruiting patients to see if regular exercise has the same effect in humans.

They told a meeting of the Society of Neuroscience how exercise might stimulate key proteins vital for nerve cell survival.

Activity

In Parkinson's disease, cells in the brain that contain a messenger called dopamine progressively die out.

This means messages don't get through in the normal way, which causes the tell-tale signs of the disease such as uncontrollable tremors, slow movements and rigid limbs.

There is some disagreement within the Parkinson's research community as to the benefits of intense exercise for people with PD.

￼We can demonstrate that this sort of forced exercise improves motor function and protects the neurons affected by the disease. ￼

The study authors

While none have reported harm caused by physical activity, some studies have shown no statistical positive influence of exercise.

Dr Michael Zigmond and colleagues examined the brains of rats that had exercised for seven days before receiving a toxin that is known to induce a disease resembling Parkinson's in rodents.

They compared these animals to rats that had not been exercised before receiving the toxin.

Exercise appeared to protect the brain against Parkinson's-type damage.

Fewer dopamine-containing nerve cells, or neurons, died in the exercised rats compared to the sedentary rats.

The researchers believe exercise stimulates the production of proteins that are important for the survival of neurons.

Human trials

These proteins are called neurotrophic factors. One particular neurotrophic factor, GDNF, was increased by 40% in the rats that had exercised.

Dr Zigmond said: "We are certainly encouraged that in our experimental models we can demonstrate that this sort of forced exercise improves motor function and protects the neurons affected by the disease."

He said they were so encouraged by their findings that they were now beginning a study whereby patients with Parkinson's disease will be enrolled in a 60-minute exercise programme that will meet three times a week.

A spokeswoman from the Parkinson's Disease Society said: "These are interesting results.

"For people with Parkinson's, exercise can improve general wellbeing and help with strategies to perform specific movements and tasks, guided by a professional such as a physiotherapist.

"Exercise and physiotherapy can also help with other difficulties through, for example, improving posture, falls prevention and benefiting circulatory problems."

But she said: "There is, as yet, no evidence to suggest that exercise can have a neuroprotective effect in people with Parkinson's disease."

Saturday, October 23, 2004

CHRONICALLY OVERACTIVATED STRESS-CORTISOL STATE

A LOW CORTISOL RESPONSE TO STRESS MAY BE PRODUCED - And continuing stressors may increase the release of certain cytokines that cause M.E. symptoms

Today, while clearing out my drafts folder, I found this post. It never made it into my main blog, probably because it did not fit in with some posts in May on the Sudan.

Glad I found it because I had been thinking of asking my GP if there is anything that can be done to test me for Cortisol problems, and ask him if there a remedy. Also, I want to ask Lupus and Lyme disease and find out if I have ever been tested. The week I became ill I do recall a huge bite on the bone of my ankle - it was very itchy and came up as a big round lump - it was such a bigh welt I thought I had been bitten by something out of the ordinary. But it may be just a coincidence. In those first few months I had a lump on the knuckle of my finger that was very itchy - I asked a chemist about it and she thought I had been bitten. It tooks months for it to slowly go down and disappear. Another pearly lump appeared on the back of my thigh - like a little pearl - I asked my doctor at the time about it, she couldn't work out what it was and didn't make much of it, so I just ignored it. That lump is still there and alternates between growing larger and then smaller, its like a sort of wart but soft skin, a fleshy colour - not rough or dark. It's probably nothing and I don't think about it because I don't often see it.

This illness is not a matter of sheet exhaustion and tiredness. If that was the only problem, one could drag oneself through it with matchsticks to hold open the eyelids. I don't understand why there are such deathly feeling aches, pains, earaches - you name it - moving around my body.

Surely there must be some sort of explanation. Something definitely flares up and moves from throat to jaw and gums and ears right down through the legs and into the joints. Like when you have a bad bout of flu, and someone asks "how do you feel and where does it hurt?" How do you answer? You feel miserably ill all over and ache from head to foot, inside and out, in the throat, gums, head, hair, eyes, muscles, joints -- cold, weak, low spirited and out of sorts. Not just tired.

Here is the post:

Every M.E. patient I've ever spoken to (probably 50 over the phone over the past five years) complains of stress intolerance and an intolerance to alcohol. Seems to me there is something awry that affects the central nervous system and spine - and in turn the muscles and brain.

In the early days of my illness, my theory was (and still is) that there is a problem with Cortisol. Cortisol is a hormone that is produced by the hypothalamus in the brain to help us to handle stress.

Every M.E. patient that I know has a problem with temperature control, concentration and stress. My understanding of the hypothalamus in the brain is that it handles those three functions.

When I get stressed (even feeling extra happy or enthusiastic about something can do it) it affects my whole body like it's been attacked with poison. Alcohol has the same effect.

Here is a copy of the Tip of the Day for May 10, 2004 courtesy of ImmuneSupport.com. It pertains to Fibromyalgia (FMS) and I am posting it here because it neatly describes what I am trying to say about M.E. Trouble is, no advice is given on what to do, or point in the direction of any treatments. Here is the tip:

FMS may begin with a chronically overactivated stress-cortisol state. Over time, as the system gradually "tires," a low cortisol response to stress may be produced. In turn, continuing stressors may increase the release of certain cytokines (chemical messengers between cells) that cause pain, fatigue, cognitive impairment, and other problems, while inhibiting the cytokines that promote positive functions such as sleep and tissue repair.

(Source: Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses - The Comprehensive Guide, by Katrina Berne, Ph.D. Published by Hunter House books and available at www.hunterhouse.com.)

Note to self: Find out How to inhibit the cytokines to promote positive functions such as sleep and tissue repair.

Magnesium

Magnesium is frequently mentioned as something that may be of help to those with ME/CFIDS. If any readers have knowledge or experience of taking Magnesium, I'd sure appreciate a few lines in the comments. Thanks. Here is a description of Magnesium, courtesy CFS website:

Magnesium is a mineral that is needed by every cell of the body. Magnesium is needed for bone, protein, and fatty acid formation, making new cells, activating B vitamins, relaxing muscles, clotting blood, and forming ATP - the muscle's energy source. About half of the body's magnesium stores are found inside cells of body tissues and organs, and half are combined with calcium and phosphorus in bone. Only 1 percent of the magnesium in the body is found in blood. Dietary sources of magnesium include green vegetables such as spinach, as well as nuts, seeds, and some whole grains. The magnesium content of refined foods is usually low. Whole-wheat bread, for example, has twice as much magnesium as white bread because the magnesium-rich germ and bran are removed when white flour is processed. Interestingly, calcium and magnesium compete for absorption and too much calcium in the diet blocks magnesium absorption. For this reason, combined calcium / magnesium supplements should contain approx. a 2:1 calcium / magnesium ratio for the greatest effectiveness.

Studies on whether CFS patients are deficient in magnesium have been conflicting, with some finding a deficiency, and others finding normal levels. However, as both anecdotal reports and a double blind, placebo trial have found that magnesium supplementation may help to improve CFS fatigue, sleep, and to relieve muscle aches, it does seem like a reasonable treatment course to try. Moreover, as magnesium is inexpensive and essentially non-toxic (the primary side effect of taking too much magnesium is diarrhea) it does not pose a significant health risk.

Magnesium supplements can be taken as oral tablets, liquid, or as intramuscular injections. Oral magnesium is easy to take, but tends to be poorly absorbed. Magnesium chloride, citrate, gluconate and sulfate are the forms that the body absorbs best, while Magnesium oxide is often the cheapest, but is also the most poorly absorbed. Magnesium sulfate injections can be painful are are certainly more time consuming than simply taking an oral dose at home, but the injections seem to be a more reliable method of producing symptom improvement, even if the individual has a normal red cell magnesium count. The usual regime is 1gm/2mls given intramuscularly (1gm of 50% contains 100mgs of elemental magnesium) weekly for 10 weeks. After this, some patients may benefit from an injection every 1-4 weeks. Another approach is the "Myers Cocktail", which involves more regular injections, say every 3 days, in which a smaller amount of magnesium (1- 4 cc of 20% chloride or 50% sulfate) is added with other ingredients like vitamin B complex, vitamin C, calcium, an perhaps vitamin B12, and adrenal complex.

Live in the present. Illness presents limits and limitations for right now, not necessarily forever. You are not facing total, irrevocable deprivation. Life's only constant is its unpredictability, and most things are temporary. Your health may improve with self-care, treatment, and the passage of time. Examine and modify unrealistic notions to create a "new normal" based on how things are now. Slow down, live in the moment, and enjoy the ride when you can. Give yourself time to just be.

(Source: Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses - The Comprehensive Guide, by Katrina Berne, Ph.D. Published by Hunter House books and available at www.hunterhouse.com.)

Saturday, October 16, 2004

BBC report - Gulf War syndrome 'does exist'

Here is a copy of a BBC report October 2004 that brings hope to all of the fit young soldiers who were struck down in the prime of their lives by an illness that is very similar to mine.

This illness is bad enough for a female, but for a man to suffer the distress and tears it brings (it's not emotion - it's something to do with the illness) feels humiliating enough for me - it must be very hard for men to bear, especially if they live with a partner who can't possibly comprehend the never ending suffering and severity of symptoms.

It makes you want to crawl up the wall and scream for the world stop because you want to get off - it's that bad: but nobody, apart from other sufferers, believes you and it makes the world feel very cold and harsh. You are not lazy or crazy but everyone including doctors and other health professionals and helpers think you are.

Upon diagonsis nobody prepares you for the profoundly disabling chronic illness ahead. Nothing can be done to help alleviate your suffering - no treatment, exercises or diets to try - nothing, zilch, zip.

Medical advice is so poor it's actually hazardous to your health. You find out the hard way why you need to ask for adrenalin free injections at the dentist and avoid doctors who prescribe treatments of excercise and psychological therapies. You learn not to waste precious energy chasing rainbows of alternative medicines, painkillers and tranquillisers - as you find any kind of pills, potions, magnets and snake oils exacerbate the symptoms and make you even worse for weeks and months on end. Most people including family and friends will think you are just tired or depressed and that really it is all in your mind.

God bless all the poorly veterans suffering GWS around the world. I hope this news is the beginnin of something new - a ray of hope - and that steps will be taken in the right direction to provide the help and support they need and research into treatments.

The veterans' illnesses had until now been unexplained.

Scientists in the US say they have demonstrated the existence of the illness known as "Gulf war syndrome".

The findings can be seen in a report by the influential Research Advisory Committee on Gulf war veterans' illness, leaked to the New York Times.

Committee chief scientist Professor Beatrice Golombe said that exposure to certain substances in the Gulf may have altered some troops' body chemistry.

Thousands of veterans of the 1991 war suffer from unexplained poor health.

Servicemen and women from the US, UK, Canada and France who took part in the operation to drive Saddam Hussein's forces from Kuwait have reported one or more symptoms, including memory loss, chronic fatigue and dizziness.

'Really ill'

Many continue to suffer from chronic and debilitating illnesses more than a decade since the war.

However, scientists had until now been unable to establish their causes.

The report said the troops' problems were definitely caused by exposure to toxic chemicals rather than stress or psychiatric illness.

Potential sources include Iraqi nerve gas and drugs given to the troops to protect them from chemical weapons.

"Gulf war veterans really are ill at an elevated degree and several studies bring consistent findings that about 25%-30% of those who were deployed are ill," Professor Golombe told BBC Radio 4's Today programme.

Ampligen Data Presented at the 7th International Conference for Chronic Fatigue Syndrome

The following is a copy, in full, of a report via ImmuneSupport.com entitled "Hemispherx Biopharma Presents Newphase III Data on Ampligen at the 7th International Conference for Chronic Fatigue Syndrome"

In his oral presentation, Dr. Strayer gave commentary on "intent to treat" analysis, which included patients who completed less than 40 weeks of the study, which showed that patients receiving Ampligen(R) improved exercise treadmill performance 19.3% vs. 4.1% in the placebo group (p=0.037, analysis of covariance with baseline as covariate).

The difference in improvement in exercise treadmill duration in the Ampligen cohort compared to placebo was 15.2% and over twice the minimum considered medically significant (6.5%). Moreover, there was no significant difference in the number of serious adverse events, missed dosages or dropouts (i.e., leaving the study prematurely) among patients receiving Ampligen versus those receiving placebo, suggesting that the experimental drug was generally well tolerated.

"We are very pleased to report unblinded information from the pivotal CFS trial with Ampligen(R). After additional analysis of the treadmill data over the course of the last few months, the treadmill improvement data actually further increased over what we previously thought. This study is particularly important because CFS is currently only managed symptomatically as there is as yet no recognized approved therapy for this major disease category," said Dr. William A. Carter, Chief Executive Officer of Hemispherx Biopharma.

There has been a growing focus recently on developing a treatment for CFS. A number of drugs have been tested, and reported upon. Results from a clinical trail using Reminyl, a drug used for Alzheimer's disease, found no evidence that Reminyl, at any dose, was better than placebo at improving CFS symptoms. In addition, the Agency for Healthcare Research and Quality (AHRQ), a governmental Agency, reported on a systematic review of the scientific literature on treatment of CFS. In its report they noted that in four trials using corticosteroids, the evidence was insufficient to make a conclusion about effectiveness.

Five clinical trials using antidepressants showed no consistent pattern of improvement. The AHRQ however did report that out of eleven clinical trials using immunological therapy, "Ampligen(R), an investigational drug...yielded the most promising results." (www.ahrq.gov/clinic/epcsums/cfssum.htm)

Study Design

The reported clinical study is a well controlled, multi-center, double-blind, randomized, placebo-controlled Phase III pivotal study of the efficacy and safety of the experimental agent Ampligen, given 400 mg twice weekly, versus placebo in patients with severely debilitating CFS. The clinical trial randomized 234 patients at 12 centers across the U.S. to assess the effects of 40 weeks of treatment with Ampligen in patients suffering from CFS.

The prospectively defined primary endpoint was improved physical performance as measured by Treadmill Exercise Tolerance Testing (ETT): Duration. Efficacy may be established by showing a medically significant increase (greater than or equal to 6.5%) in mean exercise duration (baseline compared to week 40) that is statistically significant (p less than or equal to 0.05) using a statistical method termed "analysis of covariance."

The Ampligen clinical study design was previously reviewed by a specially convened panel of the Advisory Committee, and the case definition of CFS was developed and recommended by the U.S. Center for Disease Control and Prevention (CDC).

About Chronic Fatigue Syndrome

CFS is defined by various governmental agencies worldwide as a serious debilitating disease in which patients suffer from flu-like symptoms, including primarily disabling fatigue. The CDC has added CFS to its top priority list of emerging infectious diseases. CFS is a worldwide disease estimated to affect over 500,000 people in the U.S., and a similar number in Europe.

About Ampligen

Ampligen is an experimental, specifically-configured, double stranded RNA drug. The experimental product is currently in a phase 3 clinical trial for the potential treatment of CFS and in two Phase 2b clinical trials for other chronic debilitating diseases. The FDA has already granted Ampligen Treatment IND Status and Orphan Drug Status.

Treatment IND status was granted after an earlier reported study of 24 weeks duration consisting of 94 patients with severe CFS randomized to receive either Ampligen or placebo. Only governmental regulatory agencies can make a definitive determination that the presumed efficacy / safety ratio of any new drug supports its commercial introduction for any disorder, including potential CFS treatment.

About Hemispherx

Hemispherx Biopharma, based in Philadelphia, is a biopharmaceutical company engaged in the manufacture and clinical development of new drug entities. Its flagship products include Alferon N(R) and the experimental antivirals products, Ampligen(R) and Oragens(TM). These novel Alferon-N proteins, commercially available for a category of STD infection, and experimental nucleic acids are being developed for globally important chronic diseases and disorders of the immune system including HPV, HIV, CFS and Hepatitis. Its four major technology platforms include large-and small-agent components for potential treatment of various chronic viral infections, and are being developed with various corporate, governmental and academic collaborators worldwide. Hemispherx has approximately 400 patents comprising its core intellectual property estate, a fully commercialized product (Alferon N(R)) and GMP certified manufacturing facilities for its novel pharma products. For more information please visit www.hemispherx.net

Information contained in this news release other than historical information, should be considered forward-looking and is subject to various risk factors and uncertainties. For instance, the strategies and operations of Hemispherx involve risk of competition, changing market conditions, change in laws and regulations affecting these industries and numerous other factors discussed in this release and in the Company's filings with the Securities and Exchange Commission.

Any specifically referenced investigational drugs and associated technologies of the company (including Ampligen(R) and Oragens(TM)) are experimental in nature and as such are not designated safe and effective by a regulatory authority for general use and are legally available only through clinical trials with the referenced disorders.

The forward-looking statements represent the Company's judgment as of the date of this release. The Company disclaims, however, any intent or obligation to update these forward-looking statements. Only Clinical Studies under well-controlled conditions can establish efficacy and safety of any product. Clinical trials for other potential indications of the approved biologic Alferon(R) do not imply that the product will ever be specifically approved commercially for these other treatment indications.

Living beyond baseline is causing a downturn

Here is something I have written in the past week or two. I am posting it here as a reminder that for a solid week I was unable to post to my blogs. I managed to write and send four emails.

Every day I wake up hoping to be able to blog it - but while the base of my spine tingles, I know I must resist every temptation at continuing to run on empty or I will cease to function for many weeks, months and maybe years. Right now, I am feeling so ill I wonder if I am walking a fine line between being at home and independent - or in hospital. I cannot bear the thought of leaving Ophelia behind for six weeks to go to hospital that is a three hour drive away from here. It must be preying on my mind because I wake up in the night with nightmares of being parted from Ophelia.

The trouble causing this major flare up is that I am having to manage food preparation and cooking by myself. The new lady I hired was to be the answer to my prayers. Others I'd hired could not cook and needed too much of my input which defeated the object. The new lady is a trained chef and home economist but has thyroid problems. She is undergoing treatment that is not working - her symptoms are similar to mine - so it's pretty pointless in her struggling on and getting and worse to help me - so I have to wait to see if she gets better, which might take months. I am not up to finding anyone else right now. Food is the major problem and general day to day living is the other major problem. Heh.

If I could just lay here with my laptop and Ophelia next to me, have earplugs to rest from noise, dark glasses and a peaked hat to rest from bright day light, blink my eyes twice for food and it appears on my lap, blink my eyes three times to have anything else taken care of, have telephone conversations without having to speak, received visitors without saying a word ... the company of people ... to listen to conversations - I could move mountains with my brain and heart .... and rest my body to enable whatever is wrong to heal.

It's been five years October 10 since I fell ill and, apart from the skills I've learned to manage this illness and keep down the pain, there has been no improvement. I am less mobile now than I was four or even three years ago.

Except for three weeks late Dec/Jan when there was nothing to do, food was all prepared in advance, no visitors, nothing to have to deal with or handle, no opening and closing of doors, people turning up unexpectedly -- ever since then, I went on all sorts of trials, trying to pinpoint what gave me that three week window of feeling an improvement - I almost felt like my old self - thought it might have been food, I hadn't eaten bread or oranges over Christmas - so I cut out bread and went on a gluten free diet - I cut out citrus fruits - some of it may have helped but that you'd notice.

The eyeopener I had for those three weeks was that my body felt no permanent damage, it didn't feel weak, and the pain that is etched on my face started to disappear, palor no longer white or grey, complexion got colour and eyes looked more clear and wide open and less ill.
- - -

Found this other item in my drafts folder. It is interesting to me because I was feeling deathly ill and barely functioning at the time - too ill to call anyone for a chat or manage visitors - felt desperately isolated - and uncared for. Wrote it to myself for something to do, to stop from going out of my mind and jumping out of my skin. I recall using every fibre of my being to make the writing sound the opposite from what I was feeling. I am surprised to see the quality of writing and spelling - muscles from head to foot burning, heel of foot burning, brain was in such a fog, ear was aching, throat sore, back tooth throbbed, lips dry, even scalp felt sore and hair on head felt heavy, could barely see out of burning glazed eyes, arms ached and hurt having to hold them out in front of me to rest hands on keyboard and type. Here is, unedited, what I wrote to accompany a report on Ampligen (see next post above):

These past few weeks I am feeling worse than usual and am still too ill to concentrate well enough to produce commentary on a technical post such as this. I have no-one prepare food and cook food these past few months. I am having to manage myself and it's set me back. Not that there has been any improvement over the past five years. Quite the contrary. I wasn't bedbound 23.5 hours a day in the first year. Could still manage to get to the doctors without feeling like my innards and skeleton were collapsing and body and brain getting so inflammed, I couldn't imagine meningitis feeling worse

Limited stamina means exactly that. When it runs out, it's gone and no matter how hard you try or are determined, you cannot function until something settles enough within the body. I've said it before - my feelings are that cortisol stress hormone is one of the culprits. It's the only explanation I have for the sudden trickling sensation of something that to me feels like battery acid oozing into the veins that flares up the muscles making them burn and sting and feel inflamed right into the brain affecting the eyes and ears where visual and audio stimulation

It's been said the quality of life for people severely affected by ME/CFIDS is comparable to end-stage AIDS, and that the pain and suffering experienced is the same as dying AIDS sufferers in the last two weeks of life. The reason I have written that, while what I am experiencing is clear in my mind, is that while being plunged into the depths of this illness, I wondered how it was possible to feel so ill for five years without it being terminal.

I know of only one person who suffers in the same way as I do. I have never met, only on the phone. She is 71 and more mobile that myself but has been ill for 14 years without respite. Recently a GP doubted her diagnosis of M.E. and tested her for Lupus. Nothing showed. She travelled to London to see a private specialist and spent thousands of pounds for a body scan. Results showed ageing bones is all. Her GP then sent her to her local hospital to see what they could do to help. When she turned up, they more or less asked her what she was doing there, because there was nothing they could do.

Worse than the pain and suffering and isolation is not being believed or understood. People see you using your limbs, standing and walking to front door OK. But they don't understand why you can't walk some more. Or sit up long enough to go out in a wheelchair.

Some friends say: "if only you would get out for a walk into the fresh air, I am sure you would feel better" ... "When you are housebound you lose your confidence in going out and so won't go out" ... Yes, I do have a choice but if I go out I become too ill to manage when I get back. I'd need to be wheeled on a flat bed or lay down during a car journey - just cannot sit up long enough to manage a visit somewhere and the return journey. Not that the body gets paralysed, it feels like the skeleton and innards can't handle being vertical. It's called orthostatic intolerance. If you don't lie down you will collapse. Body temperature changes, the slightest movement or distraction causes stress and something trickles and seeps into the veins and muscles like battery acid. A medical journal once described it as the body going into (medical) shock.

To my mind, Kevin, M.D. is the most perfect blog. Gorgeous style. Plain, simple and easy on the eye. Font size and spacing is just what I had in mind for mine. It is powered by Blogger too. I wonder if that means the skin is freely available. I've spent months looking for an example of how I want my blogs to look. Can't resist emailing him to ask. Fingers crossed I get a reply.
- - -

Doctors offer their opinions via the Web

Thanks to Kevin MD for pointing to an interesting piece at American Medical News online:

Note, Dr Poh, author of Kevin, M.D. blog, is listed at Ask A Specialist where members can e-mail a Harvard Pilgrim health specialist. Members can click the 'Ask A Specialist' button to submit a question, which will be directed to the most appropriate specialty. They receive a personal reply, usually within 3-5 business days. Or they can check the Archives for questions others have asked.

Here in England we have NHS Direct online and the NHS Direct telephone helpline that provides instant advice 24/7. The services are for residents in England only and are free of charge. The National Health Service (NHS) is funded through compulsory National Insurance contributions that residents pay in addition to income tax and 17.5% Value Added Tax (VAT) which is added on to most of the goods and services - including utilities - that we buy. Tax on domestic gas and electricity is around a third of 17.5%.

Links to bloggers suffering from ME/CFIDS - or something similar

The below listed blogs are authored by people who suffer from Myalgic Encephalomyelitis (also known as Chronic Fatigue Immune Dysfunction Sydrome) - or something similar. They are gathered here for copying into my sidebar and main blog at ME AND OPHELIA.

No matter where in the world you are located, if your blog (or any others that you know of) belongs in the sidebar here, please leave a comment, or email anytime, and I'll add the link. Also, if you know of any blogging health professionals that have posted on ME/CFIDS please let me know and I will write about it here with a link.

Thank you to Hazy for sizing this photo. It was taken not far from here on the south west coast of England - by a friend with a really neat digital camera that I'll write in another post later on.